Hey Tracy, that’s amazing to have it cut off to donate it. Always nice when a little bit of good can come from this horrible situation!
i tried on a lush red bob but just didn’t feel like “me” and brown made me look so washed out! Funny how different hair styles make you look so different!
they did have some pink and purple wigs but nothing crazy outrageous!
how short is your hair now?
Sounds cool. I’m thinking of going for something different too... always been dark brown but blonde would be interesting for a change...but then nobody will recognise me! I’ve just got home from the hairdressers having had 9 - 10” cut off and intending to donate my two wee plaits. Poor hairdresser didn’t enjoy having to cut it off but I feel good about it now it’s done xx PS Do they even have really funky wigs when you go to get one? Tracy xx
Sorry to disappoint Ladies but went for a very simple ash blonde wig with a fringe (which I’ve never had before so little bit different!!)
Yeah this is deffo the best group...you made the right choice
The cold capping thing does seem like a lot of effort and I know for a fact I wouldn't stick to it....good on those that have the discipline though.
I reckon you could totally rock the purple afro look....pictures welcome!
Ive been browsing lots of groups but this one really sounded lovely so thought it was time to join!
Im already getting excited at the financial savings from not having to shave or imaac!!!
i gave lots of thought to the cold cap too and agonised for ages but decided to give it a go and keep my fingers crossed. I’ve been pretty bad at “sticking to the rules” tho and continue to wash, blow dry and straighten my hair with the view that if it falls out I’ll embrace it and rock a head scarf!!! Take my hat off to you for braving the shave but love the idea of having lots of different wigs for every occasion and outfit. Going to get my wig tomorrow and trying to decide between a pink Mohawk and a purple Afro 😉
Pleased you've found the group (I think we can forgive that you're a Jan starter) It's been massively helpful for me over the past few months
Hope the cold capping works out for you (love the pick!) how true about the lady garden...and the legs and armpits, silver lining and all
So, technically not a feb starter as first treatment was 30th Jan but hope you don’t mind me gatecrashing!! Diagnosed with her2 +ve invasive ductal bc which has spread to lymph nodes so having 6 cycles of FEC-T with herceptin too from cycle 4. One treatment in and thankfully been quite lucky with side effects but starting to notice hair shredding around my ears (day 15) (and from my lady garden which I’m not complaining about). Used cold cap which was ok but felt a bit claustrophobic. Next treatment in a week so see what that brings.....
really glad to have found this group to share support and experience with xx
Started treatment this week, herceptin on Wednesday and first Paclitaxel yesterday, so far so good. The only difference I've felt so far is tired from the antihistamine. I will be having a picc line fitted next week as I've got 12 weekly sessions and only 1 arm to use with fairly small veins. I thought long and hard about cold capping, I have long dark hair halfway down my back and tbh I do rather like it😊. After reading lots of stories from others I've decided not to do it, I think a combination of all the different treatments I'll be having will cause thinning so I'm gonna go bald and brave 🏋️♀️😁(I shall be having some fun with wigs though, as many colours and styles as my bank account will allow😁💃) I really love the idea of donating my hair to the little Princes trust, it makes me feel better to know I could maybe help a girl who is struggling with hair loss..it's difficult to contemplate at the age of 49, I can't begin to think how tough it must be for teenagers and young women. I've started reading a brilliant book for anyone who is interested it's called the "Biology of Belief" by Bruce H Lipton, I've found it massively empowering. Great to read posts from other ladies going through similar experiences..I'll.keep sharing mine❤😘xxx
PICC line is fine. Only had it in a week but most of the time I don’t notice it. It has been sore a couple of times but settles quickly. I had surgery to clear lymph nodes on left side so they don’t want to use that arm for bloods/chemo. Having the PICC will cause less stress on the veins in my right arm. Often it took a couple of goes to get bloods and that was when they had two arms to try. For me it made sense to have it. There are disadvantages too. I do have to go once a week to have it redressed. You can use your arm normally but they won’t let me play tennis.
I don’t know yet if I will have a PICC line but since I am having a long course of chemo maybe I will get one too. Is it uncomfortable? I will have my first cycle on Monday or Tuesday next week. I’m going to try the cold cap too but my hair is pretty long so I think having a bit cut off will help. I’m going to ask if it would be suitable to be donated as I would feel it hadn’t been wasted and was helping someone else xx
I've just seen you post. I also cold capped and had a PICC line. The hospital should be able to prescribe a waterproof cover for you to wear when you have a shower. It's rather cumbersome as it is for protecting plaster castes but it does keep the line dry. You can also buy covers on line. I bought a much more compact one which I used during a short holiday and continued to use until my PICC line was finally removed. I was on a trial so had it in for7 months. As for cold capping I did lose quite a lot of hair, resulting in 4 bald patches and general thinning so I did wear a wig and bandanas. The good thing is that my hair has all come back thick and healthy. Some of the girls in our group kept their hair long and didn't lose too much hair. The only downside is that the new hair came back curly, chemo curls, so the hair doesn't lie flat. Hope this helps. If you or anyone has any questions or want any tips just post on our thread and someone will get back to. We all chat on Facebook Messenger now but have recently started back on here so our thread should be easier to find.
Susie B, February 19 Chemo Starters xx
Hair is what I am currently thinking about too. I am only a few days in to first cycle and I did the cold cap. I have shoulder length hair and fingers crossed I can keep it. However, the part for me is washing it. With the picc line in one arm and trying not to get that wet, I’ve thought about shorter ( but still able to pull back) just for ease. I think I am going to wait until next cycle so I don’t rush into anything and I can see how effective cold cap is. If you know it is definitely going to go then I can understand how taking control by cutting it helps.
i did a military cut and I find it easy to wear all my scarfs and no worries also when my hair starts falling
Artycart you could donate your hair to little princes trust they make wigs for children and give them away free ❤️Turn a negative into a positive 👍 I went to bob from long and gave my hair to little princes trust, it was me deciding what happened to my hair, gave me bit of control back. Suew from oct17 with me and her sister did a sponsored head shave to raise funds for cancer research, it’s your choice lovely you always do what’s right for you. Meesh on oct17 thread with me cut her hair to short bob before she cold capped and did well with it, so hope this helps you and anyone reading with your choice ❤️ My hair started shedding about day 16 after first fec then I buzzed it to grade 1, by day 10 after 2nd fec my hair was gone. Everyone is different though and hair can go at different rate. Always discuss with your units to get their guidance too 😘💕💕✨✨Shi xx
how are you all getting on with things? I have seen my oncologist today and I will be starting on Monday or Tuesday next week. Visited my local Maggie’s Centre and found it so calming and with loads of help and it really made me and my other half feel better. I had my bone scan today so hoping for some positives from that. I have had varying suggestions about my hair. Some have said to leave it long and others have said I should cut it before chemo starts. Anyone have any advice on this? T x
Hi Mini Mad
I have been to Thetford and Downham Market quite a few times, Norfolk is a lovely part of the country.
You stay safe too ♥️
Thanks for ur welcomed reply.
im one of those people who needs to know everything thats going on with me, its my way of coping i guess. Yep, second time , first was 2017, TNBC. Lumpectomy. 3 nodes, but all clear margins then 15 radiotherapies.
March 2019. TNBC again, same boob , different area. Left mastectomy and anx level 1 nodes, margins again all clear. 12 paclitaxel n 4 carboplatin plus Filgrastim jabs n zoladronic acid iv's every 6 months for 2 years.
i was determind to stay strong n positive thru the bc and i will do the same if ncessary again.
i am in a small village between Thetford and Downham Market. Been here for 16 years after moving up from down south.
so, you stay safe down there in Bristol.
mini mad xx 💖💖
Hi Mini Mad.
Try not to worry too much about biopsy results and your consultant wanting to discuss things in a meeting, it may be nothing as serious as you may be thinking. I think we all over think things when we are waiting for results, the waiting is always the worst part.
Sorry to hear this is the second time you have been on this journey 🙁.
Just look forward to that holiday it sounds just what you need and you deserve it 😊😊.
I have heard Madeira is beautiful too.
Stay safe in Storm Ciara. Stay inside and keep warm. Whereabouts in Norfolk are you? I know it very well. I am in Bristol but have spent many years holidaying in Norfolk and have family in Walsham.
Let me know how things go and stay positive
Love Carol ♥️
sorry the reduced speed didnt work for you 🥴🤷♀️
hope you dont wait too long to see ur consultant and get ur treatment sorted.
i had my final chemo last August 2019 so am settling down into ' normal ' life, whatever that means after having had bc twice now... got my first mammogram again on the 17th..
have to admit im dreading it 🤨🤨
not sure yet what i want to do for my 70th in september. Quite fancy a quiet holiday in Madeira, never been but told its beautiful 😘
just waiting on a biopsy result from my thyroid... apparently my consultant wants to discuss it in a " meeting " next wednesday with his colleagues.. doesnt sound too good to me. Whatever it is i'll just have to get on with it....
sunny here in Norfolk, just waiting for storm Ciara as we all are ... stay safe.
mini mad xx 💖💖
Have you got this info? This is what my hospital advises. If the above was the situation and you had an appointment that day don’t wait ring them straight away.
my temperature has come down and it is normal after that so decided to check with the oncologist tomorrow itself as I have an appointment with them
Hi Mini Mad
Thanks for the reply.
Yes they tried slowing down the Placitaxel drip and said this works for 9 out of 10 people but unfortunately not for me. As soon as the drip started to speed up after 30mins I then got the allergic reaction again which is why they had to stop it completely. Waiting now for appointment with consultant to see what he suggests.
Hope your through all your treatment by the time you reach the big 70 so you can have a big celebration 🎉👍
Love Carol ♥️
Artycart, I kept 3 week graphs of when I’d taken meds, when I’d done injections what my temp was, it helped me keep track of everything. You will be fine 😁 I had a positive up in the kitchen and ticked each one off, I broke it down into 3 week cycles and that worked for me, is oct17 thread had a chemo train and we 💃🏻💃🏻🕺🕺💃🏻💃🏻 Like 🤪🤪through together as you will with the feb20 thread ❤️ It’s your journey do it how you want to and any questions jump on here, use the ask the nurse facility, always speak to your bcn and your units ❤️ 💕💕✨✨Shi xx
I had my first chemo on 4 th feb and they gave me Neulastim 6 mg injection on 6th feb and now I am running a temperature of 37.1C
I have an appointment with oncologist tomorrow. So I am confused should I meet them today itself or wait till tomorrow
I am EC too. The E is red and they tell you it can turn your urine pink. In between the E and C administration I went to the toilet and wasn’t expecting it to happen that quickly. It made me laugh.
Thank you so much for your help and advice. It is really helping me so much to have somewhere to find others who can share their experiences. I have been told I will be having EC chemo. I will see the oncologist on Tuesday for a second chat and will ask about anti-sickness meds and trials. I’ve already been told I will have to call a helpline if I feel at all unwell or have even a slight temperature so will need to get a thermometer 🤒
I feel so matter of fact about all these alien bits of information that i know I’m probably going to come down to earth with a bump soon...
I fully intend to keep laughing as much as I can xx
I found the cold cap very manageable so definitely worth giving it a go if it gives a chance to save my hair. Does add additional time to session but we are used to waiting around. Cold but not uncomfortable. For me it was a bit like going outside in winter with wet hair. I had a slight headache but I have had normal headaches that have hurt more. I don’t suffer from migraines. The ache was more on the scalp rather than over the eyes. I did take the advice about taking paracetamol before. Not sure if that is what you are supposed to do.
Thank you for sharing your experience of your first chemo session. You sound as if you are feeling and reacting in a similar way to me. I fully intend to try to stay as positive and cheerful as I can and as you say just follow all the advice from the doctors, breast nurses and from all the lovely friendly people here. It is helping me so much reading everyone’s tips and stories. How did you find the cold cap? I intend to try this too. Xx
I have had my first chemo session today with cold capping. Strangely I found it a positive experience. I felt prepared and looked after. I know that what happens next is unknown as everybody reacts differently and they have to list every scary possible side effect. So will try to stay as positive for as long as I can. My surgeon commented that I was always smiling so I think it helps. Don’t get me wrong I do worry about things but they tend to be things I have control of. All along since diagnosis I have felt normal and that in itself makes you think. I continue to say I’ll turn up when they say and do what they advise and that’s all I can do. I know it’s hard to tell someone to stay positive. You feel what you need to feel but I just wanted to let you know my first session was good. Fingers crossed that continues.
Re microblading. I have been told not too, and I have to wait 6 weeks after treatment has finished to have a top up.
@mini mad wrote:
re micro blading , i would say no, not a good idea. Too close to ur chemo and rusk if
Hi artycart I was lucky my onc prescribed me perfect antisickness meds from the start, no sickness and didn’t loose my taste either. If your antisickness meds don’t work ring your unit, you will get a rapid response card. They will tweak your meds till they get right combination. Treat chemo with respect, it’s not like normal, if you get thrush mouth (se from chemo) it will need antibiotics, if your wee burns like cystitis even if you’ve no temperature spike it will need antibiotics not just a bit of cranberry juice. Have they told you which chemo you are having? It differs around the uk as to what’s given also discuss with your onc about any trials you could go on, there might be something you could be eligible for. Drink lots of water it helps flush things through and pace yourself, rest when your body tells you. There are no right or wrongs on this journey, it is your journey and everyone’s treatment plan is specifically for them it’s not a one size fits all. 👭 we are all here, breast cancer now have lots to offer you with support ask away and ring the number on here too. I kept focused on the bell in the unit and told it every time I had chemo that I’d be ringing it soon, gave me a goal. Keep 😁and always 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💕💕✨✨Shi xx
i also had a reaction to the paclitaxel when i had it on its own n not with the carboplatin.
horrendous back spasms 👿 from then on the nurses slowed the speed at which it was going through for half an hour, then increased it back to normal. I didnt have a reaction again, hope they sort you out next time.
ive got my big 70 coming up this year .😳😳🥴🥴
mini mad xx 💖💖
I am from the August 2019 thread so have finished chemo and nearly completed radiotherapy. I was also diagnosed as TNBC - like you I was initially told that it was DCIS picked up on routine mammo and all the biopsies pointed to that. It was only when I had surgery that breast cancer was confirmed. My lump was relatively small - 12mm - and could not be felt by me or any of the professionals. I then had to have more surgery to check the lymph nodes which were clear. Since then I have had six cycles of FEC-T chemo which was hard but I got through it, I will have had 20 lots of radiotherapy which has not been bad at all and I have just had the first infusion of zolendronic acid which will help prevent any potential spread to the bones. That will be six monthly for 3-5 years and is not a problem at all - it only takes 15 minutes. I can't do much more except live healthily, keep fit and try not to worry about it. You will be well guided by your clinicians and the wonderful support of ladies on here and you will get through it. I know it would have been the most tremendous shock for you. All the very best for your treatment xx
Hi again Artycart,
i also was worried about the results from my bone scan but it was all ok so fingers crossed you will be too.
the chemo i had was 12 weeks paclitaxel and every 3rd week carboplatin with Filgrastim tummy jabs thrown in.
as others on here say it is doable, we all experience different side effects and of course there are gonna be bad days. You will find your own way of dealing with them but i was determined to stay strong n positive and just ticked my sessions off my calender 👍👍
i am 6 months post chemo now and im having my first hair cut since my new growth next week. Can i answer anything else for you ? Mini mad xx 💖💖
Hi ladies just popping on from Dec 19 starters - I also have TNBC had Mastectomy 01 November and am now halfway through chemo done EC and starting Docetaxel soon - followed by radiotherapy - it is tough but it is doable - keep a diary and you'll know roughly when your low days come around - I am finding these forums invaluable 😊 my hair has gone and I have 2 wigs but feel more comfy in a beanie and love seasalts handybands - opened the front door yesterday with my bald head and scared the Morrisons delivery man! 😂 Sending love Adele
I had my first round of chemo yesterday (Placitaxel ). I had 2 allergic reactions to it and it had to be stopped. Now have to wait for consultant appointment to see where I go from hear.
On the plus side I had my first Herceptin injection with no reaction at all.
Am wondering about continuing with the Herceptin without the chemo if I can.
Has anyone else been in this situation?
Any feedback would be great
Love Carol ♥️
Just popping quickly. I'm from the February 19 chemo starters group and like you was diagnosed with TNBC and also felt stupid for not find my lump despite checking. It was discovered during my routine 3 yearly mammogram. If you want any help, advice or simply want to have a rant then leave a message on our thread and someone will get back to you. There is also another girl in our group who is also TNBC and is currently having oral chemo. The months ahead will be hard at times but It's all doable. Sending you hugs ❤❤❤❤.
Susie B xx
Hi mini mad,
Thank you for your reply. There doesn’t seem to be a lot of activity on the tnbc page. I gather it’s more uncommon. I’ve been told I will have EC chemotherapy for 4 -6 months to try to shrink the lump as it is quite large. I can’t understand how I didn’t feel it before and am so angry with myself for not checking. I guess the results of the bone scan are what I’m scared about as I’m panicking that they will find secondary cancer mainly because initially I was told I had DCIS and then yesterday they told be the bad news. How bad did you feel with the chemo? I just can’t imagine how it will feel at all and I don’t even like taking paracetamols!
i was also diagnosed with Triple Negative breast cancer, bone scan is nothing to worry about 👍 at least it wasnt for me and i'm a wuss !! 🥴🥴
wait n see what ur treatment plan is first before u start thinking about hair loss. I didnt lose all of mine.
there is a page on here for TNBC but if i can help/answer questions just ask.
you're not alone on this journey.
good luck. Mini mad xx 💖💖
Yes, I am having chemo starting as soon as possible as well as scans to check my bones etc. Thank you for your tips... I will definitely get my teeth checked ASAP as I not so long ago started working as a trainee dental nurse so I know some friendly dentists...but not sure how I will be able to continue working... or even if I should. No idea how I will cope with losing my hair but that’s the least of my worries and I fully intend to continue laughing and being lighthearted as much as possible 💕
artycart, sorry you find yourself here. A good book that helped me was surviving triple negative breast cancer by Patricia prijatel, it’s not for everyone but it helped me. Are you having chemo before surgery now? Just hang onto the handle bar in front of you in your rollercoaster cart and you’ll ride through with everyone else 👭 just take it a step at a time, get a notebook, write questions down when you have appointments. Ask away on here, use the ask the nurse facility and the someone like me option too. Quick pre chemo shopping list, thermometer, get your teeth checked at dentist, they will get you in when you tell them you are starting chemo. Soft toothbrush, anosol (steroids can block botty for a few days) get your look good feel better session booked with your Macmillan at your trust, ask about a wig voucher if you are not cold capping also check with your Macmillan for their pre loved wigs. 👭 use the threads as much as you need, there is always plenty of ❤️👭 and believe it or not you will have 😁😂🤣😂🤣too with others sharing the journey. 💕💕✨✨shi xx
I have just been given the devastating news today that I have Triple Negative breast cancer and will be starting chemotherapy in one to two weeks time. This came as a bolt from the blue because about a week and a half ago I was told that my first biopsies showed I had DCIS and just needed surgery. I’m determined to do everything I can to fight but chemo is terrifying. I would love to chat about this as it helps so much to share and support each other.
Thanks for that Mini Mad
It is good to know what I may be going into.
Hopefully side effects will be manageable.
I get hot flushes already so kind of used to those 😂.
Yes unfortunately 1960 is the year I was born so it's the big 60 this year ( although in my head I am still about 20 Lol).xx Carol
i was dreading my first session. Have to say it took ages, flush the premeds first, flush then Paclitaxel then flush then ialso had Carboplatin.
my down days where 3-5, some nausea( no vomiting ), flushed face, few aches n pains n headache. Not altogether.... oh and didnt sleep much for around 4 nights... prob the steroids. You will know when you need to rest... i walked my dog everyday for around 20/30 minutes.
i also kept a diary from day 1. Was told by nurses to take my temperature every morning BEFORE i got up so i could see over time was the ' normal ' was for me. This way you will know if you have a temperature... i never did.
write down any side effects if any and the meds you took to help.
most important is to drink LOADS... at least 2 litres per day... it can be tea, coffee, squash, ice lollies, melon anything liquid... i ended up dehydrated and had iv fluids before my chemo..... so keep drinking.... but not wine .
hope this helps but we're all different so its kinda ' wait n see '.
mini mad xx 💖💖 is 1960 the year you were born ??
Hi Mini Mad
Nice to hear from someone who has had the same treatment.
I suppose the biggest question is how did it go, was it manageable? How much did it impact on your life and were the side effects
I am usually a very busy person who helps to look after 4 grandchildren, so obviously wondering how much I will be able to do with them. Any feedback would be really appreciated.
i had 12 weekly Paclitaxel when diagnosed with triple negatve breast cancer.
good luck for tomorrow. Any questions just ask.
mini mad xx 💖💖
I was diagnosed late November, had masectomy mid December.
I am about to start Herceptin and 12 weeks of Placitaxal TOMORROW!! 6th Feb. Obviously quite anxious but just want to get it over with.
Any advice, tips or just news always appreciated
Good luck to all the other Febuary starters ♥️